McDowell Hemophilia Fundraiser set for Sly McFly's in Monterey

Armida and Jimmy McDowell had been subsisting on coffee when they finally visited the cafeteria at UC San Francisco Medical Center for a decent meal.

Their second-born, a son named Cruz, had been flown there when it was discovered shortly after his birth that he had Severe Hemophilia A.

"It was the day he was getting released, and my husband and I were so happy," said Armida about the day in the cafeteria. She was also looking forward to getting home to their 3-year-old daughter.

They started throwing ideas around about what they could do in light of their experience. "'We're so helpless. We need to be able to do something,'" McDowell remembered thinking.

It didn't take long before the new parents were planning a full evening at Sly McFly's that would become an annual event.

The second annual Cruz McDowell Hemophilia Fundraiser will take place from 4-8 p.m., Sunday, Dec 2, with all proceeds going to the Central California Hemophilia Foundation.

"It's neat to see that people care," said McDowell, who noted her family has been overwhelmed by the positive response in the community.

Hemophilia is a rare disease that affects 1 in 5,000 people, mainly males. It's normally genetic, though in the case of the McDowells it is not. Those suffering from the condition lack sufficient proteins, either factor VIII or IX, that the body needs to clot blood. Hemophiliacs are classified along a scale of severity as type A or B, depending which factor is missing.

A bleed requires an injection of the clotting protein in order to stop it. There is no cure.

What all that means for the mother of a baby/toddler with hemophilia is constant vigilance.

Even beyond the normal tumbles and scrapes any child acquires, of concern are incidents called "fingertip bruising" which can be caused by picking the child up, and "spontaneous bleeds" where a popped blood vessel can result in internal bleeding.

"It got to the point where we were in the ER once a week," McDowell said. That was before Cruz turned 7 months old.

After a particularly horrendous time at the emergency room, during which the infant had to be held down and stuck 10 times before anyone could find a vein — ultimately with the help of an ultrasound wand — his parents requested to have a port put in, a decision that could save his life.

Now, the McDowells have the ability to administer Cruz's factor at home, a ritual they perform every other day and whenever he gets a bruise or cut.

"We treated him like glass," McDowell said of their life before the port. However, new challenges have filled in. "Now that he's more active, it's harder."

Head bumps can lead to CT scans. A day at the park rough-housing with other kids can be a nail-biting experience. "It's hard for me to handle. I'm learning as a mother how to deal with that."

Of course, there is more to Cruz — who turned 1 this past August — than the blood disease he carries. "He loves cars. He's just such a typical boy," said his mom. "He's loving. He's funny. He's really funny."

Researchers are hopeful that soon protein infusions will be more effective and some recent breakthroughs in gene therapy also look hopeful. The McDowells care about raising money for research and say it's just as important to raise awareness.

McDowell wonders what would happen if she and her husband were unavailable or incapacitated and no one else around was educated in how to administer the factor.

A silent auction will be the main fundraiser for the night at Sly's, where Jimmy McDowell is bar manager. A 50/50 opportunity drawing splits the pot between the person whose name is drawn and the benefit. And The Money Band will donate their sounds for the second year in a row to make it a true party.

This year's event is kid-friendly, with elves handing out reindeer antlers. There will be a toy drive for kids that have to spend the holidays in UCSF Benioff Children's Hospital. Stuffed animals will go to local emergency response vehicles.

Come early if you want to meet the man of the hour. Cruz will be there — until grandma scoops him off for bedtime.

More benefits

A handful of other fundraisers are planned for this weekend as well, two on the same day at different locations to raise funds for Hurricane Sandy victims. A third event benefits the Carmel Valley Historical Society and is the first big event of its type for the Carmel Valley Chamber of Commerce.

Here's a brief rundown of those events:

· Coast for Coast fundraiser for Hurricane Sandy victims, 6-10 p.m. Saturday, Dec. 1, at the Museum of Monterey, 5 Custom House Plaza, Monterey. With the energetic Domingo Rivera of 102.5 KDON's Morning Madhouse hosting, this party will include live music from Matt Masih and the Messengers, DJs, wine, beer and tequila tasting, hor d'oeuvres and a food drive. All proceeds go to the American Red Cross. $25 at the door, no pre-sale. www.museumofmonterey.org.

· "Coast 4 Coast, A Hurricane Sandy Benefit," 2-5:30 p.m. Saturday, Dec. 1, Sly McFly's, 700 Cannery Row, Monterey. Hosted by lead singer Jill Childers and her band Cheeky Spanks, the event also features singers Bryan Diamond, Jaqui Hope and Lark Simmons; blues bands Rollin' & Tumblin' and Lorelei & The Groovehounds; and strolling magician Dale Mulhern. Suggested donation is $15 at the Red Cross table, where representatives from The Red Cross and Brooklyn Neighbors in Need will be present. All funds collected will go to Sandy victims. Info: Jill Childers at 277-9952 or at kozmikdiva@yahoo.com.

· The Carmel Valley Chamber of Commerce's "Elegant Evening in the Valley," 6-9 p.m. Thursday, Nov. 29, at the Carmel Valley Historical Society building, Carmel Valley Community Park, Carmel Valley Road and Ford Road, Carmel Valley. $22 in advance, available at www.carmelvalleychamber.com; $28 at the door which includes one drink and a $5 donation to the Carmel Valley Historical Society. Dancing, cocktails, hors d'oeuvres donated by local restaurants and dance music by DJ Christo. Info at Carmel Valley Chamber at 659-4000.